ALOPECIA,AREATA,TOTALIS,UNIVERSALIS

Diane L Anderson DIL_ANDERSON at pnl.gov
Mon Mar 20 16:13:08 EST 1995


In article <199503181658.LAA27213 at wanda.pond.com>, ak3m at mail-relay.pond.com (ROSS LAMBERT) says:
>
>PLEASE . CAN SOMEONE HELP ME WITH WHAT THE LATEST INFO ON THE TREATMENT OF
>THIS AUTOIMMUNE DISEASE IS. WHO ARE THE WORLD'S EXPERTS IN THIS AREA  ??
>
>ALISON, OUR DAUGHTER, IS A BEAUTIFUL 16 Y/O W/F DAUGHTER WHOSE OUTSTANDING
>FEATURE WAS HER LONG BEAUTIFUL BLOND HAIR. OUT OF NOWHERE IN AUGUST 1994 SHE
>BEGAN TO NOTICE PATCHES OF HAIR LOSS. SHE AND WE DID NOT THINK MUCH OF IT AT
>THE TIME BUT THE CONDITION SPREAD AND NOW SHE IS 80 % BALD AND HER EYEBROWS
>ARE GOING QUICKLY. H E L P  !!!!!
>
>ALISON  HAS HAD STEROID INJECTIONS IN THE SCALP FOR 3 MONTHS WITH VERY
>LITTLE RESULT. SHE HAS BEEN WORKED UP AT UNIV OF PENN AND HAS A POSITIVE ANA
>BUT MOST OTHER TESTS WERE NORMAL. SHE WAS SLIGHTLY HYPOTHYROID BUT THEY SAY
>THAT IS NOT UNUSUAL WITH THIS AUTOIMMUNE DEAL. A RETEST PROVED T3, T4, TSH
>NORMAL. 
>
>dOES ANYONE KNOW ANYTHING ABOUT PUVA ?
>
>SO WHAT DO WE DO NEXT ????
>

Ross,
I am not a medical person but would like to add my 2 cents about an
important aspect of living with Alopecia that I know about from a close 
personal friend.  You mention that her hair was an important feature of
her personal appearance... and surely its absence isn't an easy thing to
accept.  My friend was in her mid-thirties when HER gorgeous red hair 
disappeared bit by bit, and her eyelashes and brows.  After a period of 
struggle and looking for answers, she found that the best wig she could 
possibly afford was a tremendous help.  An understanding theatrical 
makeup artist helped her to learn how to create natural looking eyebrows,etc. 
The results were much more convincing than the retail makeup consultants 
provided.

My friend has always been a very stylish person. These days nothing about 
having Alopecia has diminished her appearance or confidence. However, it did 
take some time, adjustment, and some really terrific, natural looking wigs to 
help her get there.  Of course, all the while she gets regular help from her 
medical doctors.  I can't describe that part.  All I know is that I saw my friend 
become more able to cope with ALL aspects of Alopecia when she was able 
to have some control over the effect of it that is most noticeable to the world.  
When she started cracking jokes about not having to shave her legs anymore 
being an enviable effect, I knew my friend would not be disabled by this 
situation.  

Diane
 





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